PAPVR Open Heart Surgery – How to Prepare and What to Expect

I can’t tell you how scary it is to watch someone you love go through any surgery, but open heart surgery is on another level entirely. Not only do you have to prepare physically, you also must prepare mentally. The fact that for part of the procedure their heart has to be stopped and run on a heart/lung machine just seems unimaginable, but I want to assure you and your loved one that they will make it through. For 4-6 hours your loved one’s life is in the hands of doctors, who are strangers, but you must put all of your trust into the surgical team, your cardiologist and the staff to return them to you safely.

I wanted to share what the days leading up to open heart surgery were like for my husband and I, as well as the day of and days after. This is meant to help those of you preparing for surgery to understand what you can expect, but also for the spouses and care givers out there to be prepared as well. The saying “It takes a village” is so true when it comes to OHS – it takes a team to perform the operation, a team for the care in the hospital and a team of family and friends after to help with the recovery.

Some background on my husband’s heart condition:

My husband’s open heart surgery was to repair PAPVR and ASD. His surgery was on Monday February 6, 2017 at Columbia Presbyterian Hospital in NYC – the top hospital for heart surgery. His cardiologist is Dr. Robert Sommers and he was absolutely fantastic throughout the entire process. When we met with him two month’s before surgery he explained to us how a normal heart is structured and what a heart with ASD & PAPVR looks like. Here is a drawing that he made for us when we went to visit him which shows the normal heart on top and John’s on the bottom.

You can clearly see two things:

John’s pulmonary veins that should have been connecting to the left side of his heart were actually formed on the right side of his heart. This causes more and more blood to pool in the right side and the reason that side of his heart was enlarged (Partial Anomalous Pulmonary Venous Return aka PAPVR)

John was also born with a hole between the left and right chambers of his heart causing the red and blue blood to mix back and forth (Sinus Venosus Atrial Septical Defect aka ASD)

Dr. Sommers took the time to explain everything with us, answer all of our questions and follow up with us constantly during the process. He even came by on the first night of John’s surgery just to check up on him – he is absolutely amazing! Have you ever met a doctor you felt just at ease with, who you knew would really look out for you and be there when you needed them? Well, that’s Dr. Sommers and I can’t say enough about how fantastic he was to John, and me too!

The days before surgery:

As you go into the week and days before your open heart surgery it’s important to get everything in order. As you can imagine my husband was anxious and nervous, so as the caregiver I made sure to take the lead on getting everything we needed, get the house ready and try to keep my husband’s mind as at ease as possible. He had enough to worry about so I made sure to tackle all of the organizing, coordinating, etc.

Pack your bags and have them ready to go the morning of surgery with everything both of you will need. (checklist here).

You will have a pre operative day to go to a few days before surgery that will include blood work, EKG, echocardiogram and meetings with some of the team. This is your time to ask questions and meet with your cardiologist again before surgery – do not be afraid to ask as many questions as you need to.

Remove any rugs off the floor and have anything the patient will need at chest level so they don’t have to bend down or reach up for things.

Go for a massage! I planned a mini spa day the week leading up to the surgery to get a couples massage and pedicures; anything to help my husband to de-stress and relax.

Take the necessary time off from work to care for your loved one; keep in mind you will need one week to be in the hospital and a couple of weeks after for at home care. Your loved one will need constant support to do day to day tasks for the first few weeks and is not able to drive for at least two months, so plan your vacation time accordingly. For the patient, talk to your job to see if you can do some work from home if needed.

Rent a motorized recliner chair – it will be the best thing to sleep in and make getting up and down easy for the patient. I rented ours for the month from a local surgical supply store for around $200.

Make sure to wash all sheets and blankets, towels and pillow case with a natural laundry detergent that is free of any dyes and fragrances.

Put a pillow and blanket in your car for the ride home to help keep them warm and use the pillow to hold onto in case you have a bumpy ride home.

Designate one person to be the “point person” for friends, family and the doctors to communicate with until you can be back on your cell phone after surgery. It takes about 4 days until you will feel up to using your phone again so having one person that anyone can reach out to will be helpful.

This is the setup we have in our living room for post surgery recovery. This recliner is motorized and can go up and down as well as completely flat for sleeping. I also set up a side table that slides under the chair to keep drinks, food, cell phone, magazines, etc.

The night before surgery:

You won’t be able to drink or eat anything after midnight so plan accordingly. Thankfully for us the day before John’s surgery was Super Bowl Sunday so we truly enjoyed time with family that day which calmed some nerves, but sadly as soon as it was time to say good night waves of emotion hit. It’s hard to let your loved one go knowing that the next day they have to face this massive operation, but everyone gave him encouraging words and prayers. We also received a blessed rosary and a few other religious tokens for me to hold with me while John was in the hospital. Your faith is what you cling to in times like this, that’s for sure. A few things to do the night before surgery include:

During your pre operative meetings they should have given you sterilizing wipes that you need to use the night before and morning of your operation.

It’s a good idea to shave anything you normally shave so you don’t have to worry for at least a week about shaving. While you’re at it take a long, hot shower because you won’t be able to shower for quite a few days.

Set your alarm with two times just so you don’t oversleep and give yourself enough time to get to the hospital

Make sure to take your id and insurance cards.

Leave everything valuable at home even your wedding bands.

Set your away message for work emails and provide a person to contact while you are out of the office

Load everything you need in the car ahead of time so all you need to do is roll out of bed and be on your way

Wear clothes that are easy to put on and take off so that the patient can use these as their “going home” clothes

The day of surgery:

God I will never forget the morning of surgery it took everything in me not to break down and lose it. As my husband showered and got dressed I could see the dread on his face and how scared he was. It’s not easy preparing your mind for such a procedure, but try to assure yourself and your loved one it’s necessary and they will be okay. I kept reminding him that if he did not get this done now, even if he put it off for another year, he would still have these feelings and it would just be better to get it done and put it behind us. I also truly trusted in the staff at Columbia and knew if anyone could do this without complications it would be them.

Expect to fill out some paper work and then just wait for your pre op team to come and bring in you in. In Columbia you were allowed up to two people with you in the waiting area before the surgery. This is where you will go to get changed into your hospital gown, slippers and cap, and also where you will meet your anesthesiologist. They will ask you a series of questions and your surgeon will also come and speak with you to review the procedure and calm your nerves. It’s important to have someone with you in the waiting area so they can comfort you during this time. If you have any concerns make sure to share them with the team, for example my husband has a history of blood clots and DVTs so we stressed this over and over to the team.

This is the pre operative holding area you and your loved one will be in before going into surgery

After changing it was go time and there was no looking back. I kissed my husband and told him I loved him and a few other encouraging words. After he walked away it was off to the OR waiting area for me to be with my family and my husband walked into the operating room and got up on the table himself. He said he remembers the IV going into his arm, it being very cold and bright and speaking to the anesthesiologist and that was the last thing he saw. In a few hours he would wake up in the cardiac ICU.

We were told it would be about 4-6 hours before we would hear any word from the team in the OR. The operation from start to finish took 3 hours – much shorter and faster than we expected. My husband left to go into surgery at 7:30am so we assumed by noon we would hear something. To our surprise his surgeon, Dr. Paul Chai, came out at around 10:45am and told us he was finished and all went as expected. I can’t tell you the relief we all had in that waiting room and we started crying and hugging one another. Those were the best words to ever hear – to know he made it and the procedure was finished.

Dr. Chai explained a bit about what was done during the operation and said we should go to the ICU waiting area now and they would call us in to see him briefly once he was settled into his ICU room. Dr. Chai said his atrial septical defect (the hole between the left and right chambers of his heart) was much larger than he thought. He said that the hole being larger was actually a good thing because it gave him more to work with to reroute the incorrectly positioned pulmonary veins. Below is the drawing that Dr. Sommers made for us to easily explain how the procedure would work. The rerouted veins would act as a tunnel or pathway through to the left side of his heart and also help to close up the hold (ASD). In 3 hours my husband’s heart was repaired and Dr. Chai said it went beautifully.

Here is a drawing that John’s cardiologist drew to explain how they were going to repair his ASD and PAPVR.

Waking up from surgery:
It will take about two hours for them to move the patient from the OR to the ICU room. Once the patient is stable they will allow the family in for a few minutes just to see them briefly. They allowed our entire group of about 6 people in just to help us ease our mind and see him. When they come out of the OR and are in the ICU you can expect the following:

They will not yet be awake and may not open their eyes. They will hear you though so assure them with gentle words that you are there and that the procedure is complete. My husband remembers hearing his dad’s voice telling him “you did great, it’s over John, you can rest now” and that helped him to feel at ease.

You will not like what you see. When I saw my husband I cried. I almost got sick and felt faint and dizzy. I was told “it is going to look worse than it is so prepare yourself” but I couldn’t prepare myself to see him that way.

There will be a lot of wires and tubes. My husband had a tube in his neck to help give medication, a tube down his throat to help him breath, wires in his nose for oxygen, a mask for oxygen, IV lines in both arms, 3 chest tubes to remove fluids and blood, a catheter and a wire in the chest to monitor the heart.

He looked really swollen in his face, neck, hands and feet. All of the tubes and fluids they put in during the surgery make them look puffy all over, but that goes away each day

They may still have a breathing tube in to help them breath, but it will come out soon after. They try to remove it before they are fulling out of sedation to make it easier to remove, but it helps to allow the tube to breath for them until they are more awake. Sometimes it comes out in the OR, sometimes in the ICU.

They will be in and out of sleep most of the day and be in a lot of pain. They will receive a button to press for pain medicine but you have to remind them to keep pushing it since they can’t stay awake for long. It’s best to stay ahead of the pain especially for the first few days.

The first day and night was terrible for him and thankfully the team let me sleep in the ICU with John, but normally you can’t stay in ICU overnight. They usually only let you stay for short periods of time while in ICU, but the kind nurses let me sleep in a chair in the corner and every time my husband opened his eyes he would look over just to make sure I was there – it was comforting to know he wasn’t alone.

He didn’t eat much other than some liquids on the first day and they limited the amount he could drink to prevent nausea and vomiting

This is a small glimpse into all of the machines, wires and IVs on the first day in ICU. As you can see they are monitoring everything very closely and they also checked his temperature and moved him every few hours.

First 48 Hours:

My husband was in the cardiac ICU for 1 and 1/2 days. The goal is to get out of the ICU and into a regular room within 48 hours. John’s surgery was at 7:30am on Monday and he was moved into a regular room late in the evening on Tuesday which was great news. The first night was rough – they came in multiple times to run tests and change fluids and get him moving in the bed to make sure he didn’t have lung collapse. You will start with your exercises on the first day of surgery and continue them throughout your stay, and even when you go home.

Exercises are important in your recovery. He had to do the following exercises:

Back clapping -the care team may “clap” your back with cupped hands to help break up thick mucus in your lungs so that it can be more easily removed

Coughing is an important breathing exercise after surgery because it helps remove mucous from your lungs. You will grab and hold onto your heart pillow and cough a few times. It is going to hurt but the pillow helps to cushion you

Every hour he had to use his incentive spirometer to breath in and out. Breathe in slowly and as deeply as possible, raising the piston toward the top of the column.

Sitting up in a chair and getting out of bed to prevent lung collapse and pneumonia

Walking the hallways with a walker and then just with me to keep his limbs moving and prevent him from stiffening up

Every hour we had to do breathing and coughing exercises with these two things; it got easier each day but day one and two were difficult.

The day after the surgery he started to eat a bit like jell-o and drink some ginger ale, but that was it. He lost all appetite which is normal but we kept him hydrated. Once we moved into a regular room we were at least able to get a bit more privacy. We requested a private room which was more money, but allowed our visitors to come and go without worry of bothering the person sharing the room with John. It also allowed me to sleep in the room each day and never leave him.

On the second day he got out of the bed with the physical therapy team. The team was great with helping guide him in and out of bed, sitting in a chair and also walking and doing stair exercises. While it was uncomfortable for the first two days to already be moving it made a world of difference.

I have to say the food at Columbia is not bad at all – we enjoyed lots of great things while we spent the week together in our room <3

Days 3-5:

Once we were in a regular room things started to improve, but we had a hiccup on the second evening into the third day. John starting to run a fever of 103 in the evening which was a concern. They had to try to bring the fever down to ensure it wasn’t an infection and he was burning up. Thankfully by morning his fever was brought down, but it was a scary evening. He was hot, sweaty and clammy and they had to keep checking him every hour so we got no sleep. Fever can be normal in the first 2-3 days, because you’ve just undergone a massive surgery.

On the 3rd day they removed his oxygen tube that was wrapped around his ears and in his nose. They also removed his catheter and he started to eat solid foods. His hands were pretty swollen due to the many IVs and we did more walking to get him active and out of the bed. They also had him on a medication called Toradol which gave him pretty bad side effects. They made areas of his face really numb, he had a hard time concentrating and felt like he was “in a fog”. He did not feel like himself at all and asked them to stop this medicine. He knew right away that it was making him not feel right and as soon as they stopped it he felt better the next day. On the 4th day and 5th day they did X-rays on his chest to ensure everything was healing well. You could actually see the wires holding his sternum together on the X-rays. This day there was also a huge snow storm so we hunkered down, watched a lot of TV and rested.

Each day it got a bit easier to get out of the bed and walk and then eventually he was sitting in the chair more and more and only going in the bed to sleep. We did not get much sleep though in the hospital and I slept in the room with him on a chair but I never wanted to leave his side. We started to eat more and more and family was so helpful coming to visit each evening. You get very little sleep in the hospital and by the middle of the week I was running on fumes and cafeteria coffee.

Discharge:

After about a week you will be able to go home depending on your speed of recovery. Most people can go home after 5-6 days. You will receive a packet of information regarding all of your follow up care, lists of medications and also appointments you need to make after you leave the hospital. John received six mediations that were all called into the pharmacy; asparin, a beta blocker, pain medication, stool softener, blood thinner pills and injections.

Once you are home the healing really begins and you will have so much more freedom to eat and sleep and move around. We walk the hallways multiple times a day to stay active and moving. My husband sleeps on the recliner and it is easy to get up and down on his own, though sometimes he does need help. Showering is challenging and takes practice because you can’t let the stream in the shower hit the incisions. It all takes some getting used to and hopefully in a month or two he can get back to driving.

The most important thing is this is now behind us. It’s important to have support of friends and family and a caregiver because you can’t do this on your own. You will need help to do every day tasks, but there is nowhere else I’d rather be than with my husband during this time. Surgery like this really helps you realize what’s most important in life and what isn’t, and it also shows you who your true friends are as well. I am so thankful for all of mine who reached out every single day to check on us and bring food and just wish John a speedy recovery. Make sure to stay positive – everything will be fine in time <3

Thank you all for your care and concern. If you have any questions feel free to comment them down below and we can answer as best as we can.

the writer and creator of JerseyGirlTalk.com - a blog dedicated to inspiring and helping readers to feel and look their very best both inside and out. I love writing, photography, makeup, fashion and fitness.

Hi Adrianne,
Please note my sincere appreciation for sharing your husbands journey (with both patient and caregiver insights). Mid-March, I will be undergoing OHS for a recently discovered PAPVR. I am 29 years old and this journey started a mere 6 months ago. In a blink of an eye, my wife and I are being faced with this incredibly terrifying surgery.

Your blogs brought me to tears, but also helped ease my anxiety. Your list of recommended “essential” hospital items are also beyond helpful. But furthermore, reading that someone my age, with similar symptoms, survive… is inspiring.

Thank you. Thank you for sharing. Thank you for spreading awareness. <3

I am sorry you are going through this but if you have ANY questions we are happy to help. John is over a month now out of surgery and doing AMAZING! He’s already back in the gym lifting so trust me you will get through. When is your surgery and where??

Adrienne — you were an angel to share your story online. I came across your blog just weeks before my 23 yo son was scheduled to undergo PAPVR surgery. Even though we had known since October 2016 that he would need this surgery within a few years, as it got closer to the actual late May 2017 scheduled date, my dread and anxiety were pretty intense. Thank God as with your husband, my son’s surgery was actually described by the surgeon as “routine” when he surfaced from the OR almost an hour earlier than might have been expected. We had some minor hiccups in the first few days post-surgery (mainly a false positive on a test which had me in a bad way about 24 hours after the surgery until it was resolved 48 hours post-surgery). My son is regaining his strength and expects to return to medical school in early July when his second year starts. I went through everything you did, especially the morning of the surgery as we prepared to depart for the hospital at 5 am, and during the hospital stay, which was 5 days total. God bless our surgeons for restoring our precious boys to long-term good health.

Hi Suzanne I am so glad to hear of this news. I have been thinking about you and your son and wondering how things worked out. Everyday he will get stronger and soon you will look back and not even be able to believe he had OHS. Best of luck!

Hi, I'm Adrienne!
I created this site back in 2012 to share healthy recipes, fitness tips, workouts & beauty reviews. JGT is meant to inspire other women to look and feel their very best. I am a "Jersey Girl" born and raised, a Rutgers University alumni, former cheerleader, Yorkie mom, super wife, meal prepper, gym junkie, animal lover and total Aries. I believe in "The Secret", love red wine & peanut butter.

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